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Everything posted by SUE TAYLOR

I haven't posted anything, for such a long time, although I do check in now and again.
I have yet another neuroma, that is being removed on Saturday. I wish they would just stop growing! My surgeon has asked me to consider an above knee amputation, as my knee is also not great / stable.
Has anyone had to consider going from below to above knee?
I have always thought myself lucky to have my knee, but the more problems I seem to have, the more mobility I seem to lose. My left knee is looking like it will need replacing, and my RBK is not great either. I have a huge neuroma, and the nerve thickens half way down my thigh - this is the 4th one! The surgeon is meant to be cutting it out, and burying it into my hamstring, and completely re-doing my scar line, which is not great, and I have a pocket in the scar line, from MRSA. This time the surgeon is a plastic surgeon.
I am concerned that the constant neuromas, issues with both knees etc will mean that I wil have to consider taking my amputation above the knee. I am just on the limit bone wise, for my pin socket at the moment, as well. The last op - 2 years ago, they removed the fibular bone as it was chopsticking, and a massive neuroma (size of a walnut). I also have a bone spur on the fibular head, which is rubbing.
I've been an amputee for 8 1/2 years now, and always got on with it, but this last year, my mobility is shocking and I am scared I'll have no real choice over becoming above knee.
Sue
Cardiff, Wales, UK

Hi all,
Thank you for the messages of support. I had the bandages off yesterday - and it looks amazing! This is the best my scar line / stump has looked in 8 years! The Plastics team at Morriston Hospital have done a fab job. My neuroma was cut off, and then the nerve ending was split, joined together and then buried in the popliteal fossa - back of the knee.
Hopefully the nerve will not start looking for the end, and will think its on a continuous loop, where it's been joined together!
Just got to get my knees sorted now and I'll be back to better fitness.
Sue

Hi all,
I've had the surgery in Morriston, plastics unit. I have a honeycombe dressing on, at the moment, which comes off Friday - almost 2 weeks after the surgery. I had MRSA last time - 2 years ago at the University Hospital of Wales - which was another reason for opting for Morriston Plastics Unit.
The surgeon, specialises in Nerves, and so I hope for a better outcome. He has cut the huge neuroma off, split the nerve into two and joined the ends together - trying to fool it into not searching for the end. He also revised my scar line, which was untidy, due to 4 revisions.
He has buried the nerve in the popliateal(?) behind the knee.
I am hoping for a good recovery and to have less pain.
My knees - both left and right, are being looked at on 31st May by an orthopaedic surgeon, so we shall see what he says. For now, I am hoping for a good recovery and to get the nerve pain and sensation to calm down from the surgery.
Sue

Thanks everyone.
I do not want to lose my knee. My left knee is damaged and facing a knee replacement, and my right is problematic. I've had 4 revisions now - through neuromas, spurs and my fibular being unstable. I'm tired of surgery. My stump length is right on the limit for a pin system, which for me, has been a great system.
I agree about the making of the legs - it differs so much centre to centre. Saturday, the plan is to revise my scar line, which looks like tram lines criss crossing, and to remove the neuroma again, its the same one each time - peronneal nerve. They're going to bury it in the hamstring muscle - my concern has been what happens when it grows back - regarding the hamstring being able to extend etc. Surgeon says it will remove the pressure from within my socket and move it higher up, where it is not socket bearing. Many medical professionals say that as my amputation was caused through trauma - the nerves are very difficult to repair/treat. We shall see. He is a nerve specialist and plastic surgeon, so hopefully a fresh pair of eyes from the vascular/orthopaedic combination.
I've got an orthopaedic appointment end of May, and will be asking them the questions about both knees.
Sue

Hiya,
Sweating can be a problem with the liners on. Only once I used anti-persp and it made the rash even worse! I use Baby wipes to clean the skin and the liner - especially if I'm at work and it gets a bit hot. Have a look at the following link for some great products for prosthetics...
http://www.easyliner.com/skincare-landing.php
Sue

Hi Mary,
I was surprised that the Ertl isn't available in the UK - well not in my region anyway. I asked about it when I had problems with an unstable fibular, but the told me it wasn't an option! They ended up taking my fibular out, which in turn caused a bone spur to grow and I have a nerve that rubs along it. Ertl seemed such a better option!
It looks like you have given such a lot of thought to your amputation and you have done your research too. I always feel that you know when the time is right to go ahead with surgery and I would say that amputation, whilst such an afwul operation, does give many their lives and mobility back, especially after struggling for so long and trying to avoid it!
I wish you well, and you already know that you will have such support.
Sue

Mary,
I understand what you are saying about the Dr. Sometimes it's not what they say - but the way that they say it and that's what leaves the lasting impression - rightly or wrongly! When I was first told that amputation was my only option, it was a female plastic surgeon that gave me the news - in a rude and matter of fact way (it was a week after my accident and I really wasn't expecting it). When she left, I complained to the nurse about the 'lack of bedside manner' and her being so rude and blunt. Her boss then came to see me and explained the why's, hows and fully dicussed all options leading up to amputation - which was my only option really - but he was lovely, explained it all fully, showed some concern and left me thinking that I knew why and what was going to happen.
Whilst I've had a mixed bag of health, as a result of amputation, I know that there was really no chance of saving my leg/foot, and I've had ups and downs along the way. Amputation is different for everyone, some sail through, some initially, with problems later, and for some, like me, it's a mixture of good and bad. However, I am an amputee and I see that these health problems are part and parcel of this. I hoped for, and still hope for better health, but I understand now, that I have to go with it, and deal with each situation as it arises. I can't stop my nerve endings from growing so fast, but I manage my workload and life around what I can do, when I can do it, and always hope that some day, all will be well.
I wasn't told about nerve growth or any of the other possibilities - only that I may have some phantom pain! However, when I am unwell, I always look for ways to resolve my problems, new drugs, techniques etc and then surgery if all else fails! But even if I had been told, I would still have lost my leg and still have had to deal with it all, so I do.
You need to have in place good support, a good relationship with your prosthetist/physios, and a good relationship with your doctors and surgeons. Mine all know I push myself, and that when I call for help it's because it's become too bad! I have also learnt (almost 8 years) to accept my situation and health problems and to listen to my body more and to accept who I am and what my limitations are.
Only you will know when it's the right time, and the right decision - after all it's you that has to cope and live life as an amputee. You will have access to lots of advice, help and emotional support here, as we all understand what it's like to be an amp!
Sue

Hi everyone,
I haven't been on for ages and ages! I've been busy getting married, setting up our new company, family things and getting ready for more surgery!!
Still having major probs with neuromas - I have 3 of them in my stump, and I've had 3 revisions already to remove them. Tried and tested all the drug therapies that are available, had the nerve injected, but the biggest neuroma, just won't stop growing and it's so painful!
About to have my thigh opened, pull through the nerves from my stump into my thigh and bury them there, where they're not load bearing my prosthesis. The alternative is to spend more time in my wheelchair. I struggle on crutches as my 'good' knee has osteoarthritis.
Apart from that I'm good!
Sue

Hi all,
I've been away for a bit - struggling with neuromas and bone spurs! I've had 3 revisions since my amputation, 6 years ago, and neuromas are a major problem for me. I had another 2inch one taken out a year ago, and also had one on the tibia at the end of it. The biggest one grows on the common perreneal nerve. I also had the fibular removed due to instability, and came home with MRSA! I didn't go back into a leg until 4 months later and within 3 months after that had the pain again. I've now been told that the neuroma has grown back and I have a bone spur on the fibular head. I am putting off removal again and I am awaiting a scan to see if the neuroma can be injected!
I've been told that the neuromas are highly likely to keep regrowing, and that the only way is to keep cutting. I've also been informed by the vascular surgeon that there are mixed results with the injecting. When they MRI and scanned etc., the neuroma didn't look that big - but once the surgeon got in there, it was very large and wrapped into muscle and tissue. They also cause phantom sensation problems and constant 'electric shocks' in the stump.
The pain is not good, and despite a great prosthetist and many adjustments to my leg, I still have problems. At the moment walking less than 100 yards is painful.
Sue

I had a bone spur removed in December, I also had my fibular removed at the knee, and another very large neuroma removed again too! For me, the pain of walking in my prosthesis became too severe and being on all sorts of medication for pain dragged me down.
I was very unsure of the surgery, and waited until it it so bad before making the decision to have surgery and my 2nd revision. I had MRSA after they operated and have been told that there are no guarantees that the bone and neuromas won't grow again - and that it'll come down to pain management and compromise on activity levels!
It's such a big decision to make, and even now 5 months on from surgery, I'm still having pain issues and also rotation in the socket because the fib has gone. But I also know that it couldn't stay the way it was, so for me, it was the right decision at the time. Would I do it again - I don't think so - because I feel that I've done as much as I can to get as much mobility as possible, and if the problems return - I would leave it to pain management.
Weigh up the amount of pain, mobility etc and what the surgery will change for you, and then factor in being off your prosthesis for a while, possible infection etc., and then see how you feel.
Not much help, but I wish you luck.
Sue.

Hi Alex
I give my liner a gently scrub each evening - usually in the shower or bath. I find if I put anything on my skin, it turns into a rash/spots. I have used products from Alps, like sprays etc. May be worth checking out. They have all sorts of skin care etc. Here's the link..
www.easyliner.com/Skincare.aspx
Sue

I'm still here and I check in every so often.
I'm prepping up for more surgery - removal of the fib, and I've just been told that I have a rather large neuroma (again) :( on my common pereneal (?) nerve.
I will still keep checking in as I've had so much support, laughs and info from here.
Sue

Thanks guys,
It has been tough, and I was hoping that this year may be different - but I'll deal with this one, and then see what happens next! I'm not able to put on a leg at the moment, due to pain issues, and the medication makes me sleepy or sick, so I'm not in work. This is the first time since I started work at 16 (now 38) that I've taken extended time off, apart from when I've had surgery and the accident that resulted in my amputation.
The pros told me yesterday that I've got only 1 - 2cm to play with at the end of the tib, so if they need to take more bone, I won't be able to have a pin system leg. I don't want any other type of leg, as I feel comfortable and safe in this leg. I did try suction at one point, but it wasn't for me. I'm still waiting to hear about whether they will fuse the tib and fib together. Got an appt on Monday, so we'll see then.
On a plus point, my new chap is wonderful. He's so supportive of me and is ensuring that I rest and take things easy, and I know that whatever the surgery is, and brings to me, he will be there for me and the boys.
Sue

I've been told that I need more surgery and just wondered if anyone has any info on what they want to do..
I've having awful problems with my leg at the mo, pain, swelling etc. My fibular is moving about and has swelling around it that makes it look as though it's bowing out very painful. The end of the stump is bullet shaped and there's no padding on the end, and I have pain in the tibia. I've got a neuroma on the common peren1neal(?) nerve and staples mixed in, where the last surgery surgeon used staples to tie off the arteries and nerves - very painful. At the moment I am off my leg completely.
The docs are talking aboyut fusing my tib and fib together with bone taken from my hips, and I'm wondering whether anyone has any info on this, has had it done, or knows about long term stability of the leg, if this is done.
They want to take 1cm off the tib and reshape the stump and add some extra padding, remove the neuroma and the staples and replace the staples with stitches for the tie offs. If they decide to fuse the bones together this will also be done, at the same time.
All in all, a bit of a worry and this will be my 7th surgery in 4 years! I'm taking a bone pain drug called Calcitonin at the moment, which is helping, but requires topping up with pain meds.
Sue

Yep,
Bone pain is awful! I've given up on the Farabloc, and the Limb Centre doc has given me Calcitonin - a nasal drug for bone pain - so we'll see.
It seems there's also a problem with the femoral artery - some sort of blockage or something - I'm waiting for an ultrasound on the groin and also the leg, so maybe we can see what's goin on there!
Apparently, they can't or won't bone bridge the tib and fib, so, for now I'll just get on with it, and hope for a solution.
Sue

Since I had the revision in December, the tib and fib shortened, and the neuroma removed, I'm having some more problems!
I still have fib instability, and the surgeon is taling about removing it altogether. I was chopsticking, so they cut it shorter, and now its just moved the problem higher up. I've been looking for info about what may happen - realistically - if they remove it.
I asked for a bone bridge, last year, but was told not in the UK and not in Cardiff!
Any thoughts?
Sue

I've been to the limb centre today - 4th visit in 10 days!
They are concerned about the level of pain and various problems. I now have a new leg, to accommodate the fibular pain and general pain in the stump - both physical and phantom. It looks increasingly as though the fib may have to come out! Today, I had a general check with the Doc and I have to say she was very thorough. I have pain in the Ulna in the elbow, so had a steroid injection today and I'm being put on Calcatonin Nasal Spray for the bone pain. I think the biggest surprise was that during the check, she found I had pain in the groin area and on further investigation, there may be a problem with the femoral artery. I now have to have an ultrasound on the stump and for the artery also! I've had some problems with pain in shoulder, hip and I thought it was sciatic - but it's not. I've got Farabloc in my socket and a night sock too - but after 4 nights, there doesn't seem to be any relief and my calf cramps are getting worse!
So, a fair bit going on, and it's been a tough year so far for me, with more to come, I feel.
Sue.

Hey Bear,
Yep it's a pain! I was off my leg for almost 3 months! It was longer than when they amputated it. The 1st time around I was only 6 to 8 weeks and I was back in work and on a leg. This 2nd time, I was back in work BUT on crutches - it drove me mad!
I sometimes feel it's a bit of a roller coaster and they don't tell you ALL the facts when they amputate - but hey, it is what is is and I just get on with it!
Sue